Today I went back to Huntsman to have a consultation with a Radiology Oncologist. He feels like he could help me. That was encouraging. Radiation has always helped me in the past.
The plan is to go make my radiation molds when we get back from vacation and have radiation for three days in a row the day before I have my next infusion.
1- It will help with my pain in some of the tumors
2- it will encourage the immune therapy infusion to kick in and get it working.
I was very encouraged. There will be the side effects I had last time, mainly with me, no energy, lots of fatigue, and nausea. I will be making many trips to Huntsman after our vacation. I am glad I have this option. It makes me very happy.
Thursday, April 21, 2016
Sunday, April 17, 2016
Infusion needs to kick in!!
The top picture is of Kim and I waiting to go into the infusion room.
I went to Huntsman on Thursday. My oncologist talked to a radiology oncologist about me and showed him my images. They both think that if I was radiated on a few of the tumors, it would help with my pain and kick start the infusion to start working. So they made an appointment for me to see this new oncologist next week.
We had a long talk about my future. I learned that if this infusion doesn't work, that I most likely wont last through the summer. That was sobering.
We also talked a lot about me going on vacation to California next week. He really wants me to go. He said that it may be my last vacation and I need to go. This is so nuts to me. I see these terrifically sick looking people at Huntsman who look like they are in the last days of their lives, and then there is me. I don't even look sick yet. I almost feel guilty during my infusion because here I am plucking along looking normal while they look so ill. And then I hear that I only have a few months left if the infusion doesn't work. It just doesn't make sense to me. But, you know........none of my cancer has made sense to me or any doctor who I go to.
The only thing that has been different with me lately, is my pain. I have several places that I hurt where I used to not. He would show me on my body where new tumors were and sure enough, it was my new pain. I pretty much have to take pain medication every day now and also something for nausea each day. So I know because of that, things aren't going well inside. It just isn't manifesting itself yet outwardly.
So that is my latest news. I just keep praying that my infusion is going to work. I am on a roller coaster ride like no other.
Wednesday, April 13, 2016
Funny Prescription!! And its legitimate!!
I went to my family doctor yesterday. He told me that I don't need oxygen any more but I do need home health physical therapy. It made me glad that I can toss the oxygen.
He also wrote me a prescription for when we go on vacation next week, to have a wheelchair at Disneyland. It cracked me up. I thought he was kidding when he said he was going to do it, but he was serious. He wrote a novel on the prescription about what I was going through and how I needed to not wait in line. I did get a laugh out of it though.
On a whole, on a scale of 1-10, I feel like a 5. I am noticing that I have pain in many different places now than I have in the past. Now that I am getting more tumors in new places, it is expanding in different places in my body and I am starting to feel them.
I am getting stronger though. That was my hope this week as I am going to Huntsman tomorrow for my third infusion. I just knew I needed my strength to be able to do an infusion so close to my hospital visit. My oncologist said that about now, a month into the infusions, that my body should start responding to the infusion. If it is going to work on me, it needs to kick in fast and stop the tumor growths and stop new ones, because they are out of control fast now. I feel that this is my last chance. I want to be that "one-in-four" to have this work. I need it to be me!!
I cannot stress enough, how caring and loving my family, neighbors, friends and ward members have been to us. There seems to be an act of service in our/my behalf daily. It is so humbling and emotional for me to accept so much kindness from others. It is so hard for me to be on a receiving end of service and ask for help in someway or another, and tears fall freely as I write this because I am so in debt to practically everyone I know for their kindness and service to me. Thank you to all of you reading this who send me cards in the mail, take me to doctor appointments, bring meals, treats, phone calls, or just text me to see how I am doing. It is so humbling to us both.
Last but not least, is that I have an angel husband. That is the only way to explain him. He is so invested in my comfort and well being, that he amazes me. Where does he get the mental, emotional and physical strength to always be there for me? Love constantly flows from him to me in assisting me. I really couldn't do this alone. Thank you Kim. You will always be the love of my life.
He also wrote me a prescription for when we go on vacation next week, to have a wheelchair at Disneyland. It cracked me up. I thought he was kidding when he said he was going to do it, but he was serious. He wrote a novel on the prescription about what I was going through and how I needed to not wait in line. I did get a laugh out of it though.
On a whole, on a scale of 1-10, I feel like a 5. I am noticing that I have pain in many different places now than I have in the past. Now that I am getting more tumors in new places, it is expanding in different places in my body and I am starting to feel them.
I am getting stronger though. That was my hope this week as I am going to Huntsman tomorrow for my third infusion. I just knew I needed my strength to be able to do an infusion so close to my hospital visit. My oncologist said that about now, a month into the infusions, that my body should start responding to the infusion. If it is going to work on me, it needs to kick in fast and stop the tumor growths and stop new ones, because they are out of control fast now. I feel that this is my last chance. I want to be that "one-in-four" to have this work. I need it to be me!!
I cannot stress enough, how caring and loving my family, neighbors, friends and ward members have been to us. There seems to be an act of service in our/my behalf daily. It is so humbling and emotional for me to accept so much kindness from others. It is so hard for me to be on a receiving end of service and ask for help in someway or another, and tears fall freely as I write this because I am so in debt to practically everyone I know for their kindness and service to me. Thank you to all of you reading this who send me cards in the mail, take me to doctor appointments, bring meals, treats, phone calls, or just text me to see how I am doing. It is so humbling to us both.
Last but not least, is that I have an angel husband. That is the only way to explain him. He is so invested in my comfort and well being, that he amazes me. Where does he get the mental, emotional and physical strength to always be there for me? Love constantly flows from him to me in assisting me. I really couldn't do this alone. Thank you Kim. You will always be the love of my life.
Tuesday, April 12, 2016
Saturday, April 9, 2016
ER- Hospital stay and Pneumonia
Good grief. Where do I begin? Through all these new infusion reactions of intense muscle pain, lets add some more things to the pot and stir it all up, why don't we!!!
Kim's birthday was this week and we went away overnight for his birthday Monday night. We had a great time watching the March madness finals, and just enjoying being away. The next morning, madness broke out in my body. At 7:00 am the next morning, I started hurting in my right side, abdomen until it was such gripping pain I actually thought I could pass out. I was getting nauseous and the pain was so acute and sharp, I couldn't get off the bed nor turn sideways. Only lay on my back. Poor Kim had huge concern on his face. He could tell something was not good. He called Huntsman and talked to my nurse there and she was concerned because it sounded like it could be appendicitis from where the pain was coming from. We went right to the emergency room. I got a CT scan and found out I had three new larger tumors and gall stones. Now the question was, was I having a gall stone attack, was the pain from the new tumors? Was it my appendix? What the heck was going on? I had no fever so more than likely it wasn't my appendix. After 3 hours in the emergency room I went home to just watch for any fever over 100.4. If so, I needed to come back. I was in so much pain and in the evening I took my temperature and it was 101. We looked at each other, and DID NOT want to have to go back to emergency, but we decided we needed to.
Then every test imaginable was run. I was in so much pain. They were concerned that it was gall stones and finally ruled out appendicitis. Then a test came back showing that I had pneumonia. At 2:00 in the morning they said that I needed to be admitted. I can honestly say that that day was one of the worst days of my life. I had never had that intense pain before. I truly felt I was dying. The question was, what was I dying from?
All the way as they were taking me to my room on the floor, I threw up like never before. I don't even know how many times. I was sicker than I had ever been. I literally just wanted to die.
After more scans and tests, they finally ruled out gall stones as the reason for the intense pain. It was from the pneumonia is all they could find out. The three new tumors were probably not helping things either.
As I laid in the hospital I realized how thankful I was to not have those other possibilities and that I just needed to get better from the pneumonia. I know that I had people from the other side of the veil there cheering me on. Sometimes in my sickest moments, I would look around the room to see if any of my dead family members were there. I knew if I could see them, that it was my time, and I was going to tell them to go back!! I wasn't ready to go "home" yet!
This all started Tuesday morning and I got home from the hospital Friday night. I was so glad to be home in my own bed, and not hooked up to all those things anymore.
I did have to come home with oxygen. I just couldn't get enough oxygen by myself. I needed the oxygen machine. It didn't take long before home health had it up to our house and installed the machine with a 50 cord to go all over the house. I sure do feel better breathing with it. I should only need it till the pneumonia is cleared up and I am breathing better. What a week this has been for both of us. We are so glad it is over. I am just exhausted!
Kim's birthday was this week and we went away overnight for his birthday Monday night. We had a great time watching the March madness finals, and just enjoying being away. The next morning, madness broke out in my body. At 7:00 am the next morning, I started hurting in my right side, abdomen until it was such gripping pain I actually thought I could pass out. I was getting nauseous and the pain was so acute and sharp, I couldn't get off the bed nor turn sideways. Only lay on my back. Poor Kim had huge concern on his face. He could tell something was not good. He called Huntsman and talked to my nurse there and she was concerned because it sounded like it could be appendicitis from where the pain was coming from. We went right to the emergency room. I got a CT scan and found out I had three new larger tumors and gall stones. Now the question was, was I having a gall stone attack, was the pain from the new tumors? Was it my appendix? What the heck was going on? I had no fever so more than likely it wasn't my appendix. After 3 hours in the emergency room I went home to just watch for any fever over 100.4. If so, I needed to come back. I was in so much pain and in the evening I took my temperature and it was 101. We looked at each other, and DID NOT want to have to go back to emergency, but we decided we needed to.
Then every test imaginable was run. I was in so much pain. They were concerned that it was gall stones and finally ruled out appendicitis. Then a test came back showing that I had pneumonia. At 2:00 in the morning they said that I needed to be admitted. I can honestly say that that day was one of the worst days of my life. I had never had that intense pain before. I truly felt I was dying. The question was, what was I dying from?
All the way as they were taking me to my room on the floor, I threw up like never before. I don't even know how many times. I was sicker than I had ever been. I literally just wanted to die.
After more scans and tests, they finally ruled out gall stones as the reason for the intense pain. It was from the pneumonia is all they could find out. The three new tumors were probably not helping things either.
As I laid in the hospital I realized how thankful I was to not have those other possibilities and that I just needed to get better from the pneumonia. I know that I had people from the other side of the veil there cheering me on. Sometimes in my sickest moments, I would look around the room to see if any of my dead family members were there. I knew if I could see them, that it was my time, and I was going to tell them to go back!! I wasn't ready to go "home" yet!
This all started Tuesday morning and I got home from the hospital Friday night. I was so glad to be home in my own bed, and not hooked up to all those things anymore.
I did have to come home with oxygen. I just couldn't get enough oxygen by myself. I needed the oxygen machine. It didn't take long before home health had it up to our house and installed the machine with a 50 cord to go all over the house. I sure do feel better breathing with it. I should only need it till the pneumonia is cleared up and I am breathing better. What a week this has been for both of us. We are so glad it is over. I am just exhausted!
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